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Wednesday, April 30, 2014

Twelve days. On Monday, I felt a little bit better and decided I should make myself a real dinner. Spaghetti sauce is fairly easy and once I start the sauce at around 2 PM, I don't have to do anything but occasionally stir it till I'm ready to make pasta. As I was browning the meat I had taken out for it, it smelled funny. Not funny-ha-ha, though. So, I made sauce without the meat and that was dinner.

However, after loading the dishwasher and cooking pasta, I was wiped out again.

"You Had Plans? (laughable life with Fibro)"
~My life in novelization.

"Sleep? You don't need Sleep!"
~The sequel.

"You Feel Good- RELAPSE!"
~To round out the trilogy.

"You Wanted to Clean the Kitchen But Only Loaded the Dishwasher"
~A Novella.

"Wake Up! How to Set Multiple Alarms (and what to do if you sleep through them)"
~a how-to book.

Sunday, April 27, 2014

I just ordered pizza for dinner because the very thought of standing up to cook makes me want to cry. Standing up to answer the door is so much easier than standing in the kitchen to cook. And sadly, I'm out of the frozen-throw-in-the-oven food that I usually have on hand. It is only slightly better for me than the pizza with extra pepperoni I just ordered.

On top of the wonderful pain I've been having every single day for the last nine days, the fatigue has finally decided to kick me in the face. Up till now, it was only playing catch with me and wasn't a huge problem. But today... today I am exhausted. I stood up at 2 PM to make sauce for spaghetti later. When I became vertical, my body instantly wilted, like a sad daisy. Why is the daisy sad? Because gravity sucks, that's why. I sat back down and stared blankly at my computer monitor. At 3 PM, I stood up again and then sat down again. The daisy was even sadder then. At 4 PM, the daisy decided to order pizza and then somehow, waited another hour to get that done. (all of this happens with random moments of having to take the dogs out and having to "take myself out", if you know what I mean, and no, don't think about it. Sorry, I made you think about it).

Part of today's exhaustion is linked to yesterday, I'm sure. I did some photos at a charity event in Janesville. It was windy, but not too cold when I left my house. I was wearing a cardigan (because I'm old) and it proved to not be warm enough at my destination. I should have worn a hoodie (because I'm not that old). Here's a link to the photos on my Facebook page. The cold definitely settled into my body like it owned the place. This morning wasn't so rough, I thought maybe I'd shaken this stupid flareup spell. But, upon my feet hitting the floor, I realized that alas, it was not over.

I found today, though, that I could reach some relief by sitting on the loveseat, almost completely immobile. If I moved any body part, though, the pain shot through said body part as a special reminder as to why Chronic Illness is stupid and needs to stop being stupid. I'm not getting semi-horizontal on the loveseat right now so I'll be able to get to my feet when my pizza arrives. (which is in about 40 minutes, according to the countdown clock on the website I have opened in another tab). After I go into a pizza coma, I will semi-horizontal myself and watch the animation lineup on FOX. A little dessert with my favorite nerd and maybe I'll be good enough to get up to go to bed. Yeah... bed... but first, food and nerdery.

Because I mentioned taking those photos at Lake Michigan in my last post, here's a few shots for those of you who aren't on my Facebook profile to get sick of them.
(if you click on the first photo, you'll end up at my Flickr where the rest of those photos are located).

Friday, April 25, 2014

At what point can we change it from: "I'm having a fibro flareup" to "Well, this is a bad fibro spell..."? Because I've been having a flareup for seven straight days so far. Every day, I chomp down extra pain meds just to get through my day. And gods forbid I have to do anything on those days. I've been taking daytime pain meds just to deal with sitting around my house in pain. The days I have to leave the house, I take my pain meds to time with my activity. Just yesterday, I waited till 12 noon to take my pain meds, so they'd be in full force when I got to my daughter's college (her dorm room is on the third floor, no elevator! Maybe its the second floor, I don't really know, there's a lot of stairs).

Since I put off those meds till I left, I spent hours in a joint-crushing agony. My muscles burned, my joints felt like they were being smashed together. Even my robot knee felt like a human knee. I'm sure that sensation was merely muscle/tendon pain, since the actual joint is, you know, cyborg. About 45 minutes into my 70-ish minute drive, I felt the Vicodin kick in... and it was like a wave of relief. It didn't kill the pain (never does), but it eased the pain enough that I was able to relax my body somewhat. Upon arrival, I conquered those stairs, then I went down to Lake Michigan to take a short, text-able video for the Disabled Guy. And of course, I took some photos.

When I got home at 6 PM (that would be me being gone for literally exactly six hours), the Vicodin had started to wear off and all my muscles were stiffened up when I had to climb out of my vehicle.

And now today... day fucking seven. I'm officially changing the name of this "flareup" to "spell". I'm having a fibro spell. This is a hellish session. I'm hoping this incident doesn't last much longer. This fibro term can't keep going. How about outburst? Fibro explosion? No, that sounds like "flareup".

With this week-long session of Hell, I've been simultaneously aware of my body and completely out of touch with it. I usually have spatial awareness, as in, I know how fat I am. But these last few days, I've bumped into things that I normally swing by without a problem. And no, I'm not bumping into things because of a neurological issue. Its because I'm shuffling and limping, so my body is swinging around in an abnormal way.

I'm also in a love-hate relationship with my clothes. I need to wear clothes, but I don't want to wear them. I need soft clothes, but then, I need to do laundry. These are things that I don't want to deal with... can't I just wear jeans and a shirt without having to decide if the fabric is soft enough? Speaking of jeans- that's the one piece of clothing I have no choice in... jeans are jeans. Not much I can do about that. And I'm sorry all you yoga pants wearers, you may look fabulous in a pair of yoga pants, but I do not and I am not wearing them out in public.

"But what about YOUR comfort? Fuck the haters!" I hear you saying. Well, I'm more comfortable in jeans in public. I don't know how to explain it. It's a mental thing- jeans or ren faire clothes. That's all my ass will be covered in when its out there in public.

I'm gonna wrap this up because I'm hungry and I'm going to make myself a sandwich for dinner. Maybe two. (turkey on whole wheat with Swiss cheese and lettuce- because I know how to party hard on a Friday night!). Also, the dogs need to go out and there isn't anyone else who can work the doorknob.

"Have kids," they said, "They can do chores," they told me. Well, They failed to mention that those kids grow up and move out and have "lives" and "jobs" that make it impossible for them to come here and be at my beck and call. Damn kids...

Tuesday, April 22, 2014

I'm in my fourth day of a flareup. A word I hate, because like "hot flash", it implies that it is a short burst of whatever and then gone. This is a flare-drag-on-and-on-and-on-and-on. Not to be confused with a "flare dragon" which is the most fabulous dragon in Dragon Land.

Fibrofuckingmyalgia won this round. I've taken daytime Vicodin even though I don't have to go anywhere or do anything. And, it isn't even helping. I'm only wearing clothes because society frowns on the whole "taking my dogs out while naked" thing. You know how society is- "Don't do this" and "don't eat that". Ridiculous because "this" and "that" are usually the most fun things you can do and eat.

Fuck society and fuck fibromyalgia.

I can't wait for ren faire season. I would rather be dealing with this while dressed in *ridiculous clothes and standing outside with a group of people also dressed in *ridiculous clothes.

*ridiculous= awesome.

See? Look how happy I am even though I'm probably in a lot of pain (depending on what time of the day it is).

Sunday, April 20, 2014

That would be American pants. I'm actually still wearing English pants. (and if you don't know what the hell I'm going on about- don't worry about it. Also- you should Google: "What does 'fanny' mean in England?").

I'm not wearing pants. And I've been suffering for the last two days with a pretty major flareup. How major? Well, I've tried to write about it twice and twice I deleted it. On Saturday, I kept turning my alarms off and I finally decided to get up... I looked at my clock and it read 6:18 AM. (little more than an hour later than usual). I was laying on my stomach, so getting up should have been as simple as turning to my side and pushing my legs over the edge of the bed, and having gravity force the rest of me to sit up. Except I couldn't turn to my side. I could barely move.

Pain decided to sit on me and pin me to the bed much like The Rock would have pinned me to the mat after I told him I could not smell what he'd been cooking. It would have been a pretty one-sided match anyway, be glad you didn't buy tickets to that gun show. I couldn't roll to my side to sit up. I couldn't move much at all. I ended up grabbing my headboard (which is made of wood and has spindles in it like a staircase has) with both hands and I was able to pull myself up in the bed, then I wedged pillows under my chest to give me a little leverage to swing my legs over. When I picked up my phone to check the time, it had been two minutes. It took me two goddamn minutes to get upright in bed.

By the time I got downstairs (where my caffeine and medicine happen to be), it was 6:28 AM. Yeah, ten minutes. It took me ten minutes to get from my bed to the bottom of the stairs. I spent Saturday dragging around my house and wishing I could just lay flat on the bed. But for some reason, the dogs haven't figured out doorknobs or how to let themselves out. Plus there are hawks in the neighborhood and damned if I don't want my dogs to be part of the food chain.

Sunday was pretty terrible too. While I didn't have to struggle so hard to get out of bed, I did end up falling asleep while sitting upright on the love seat. I was watching a movie, because sitting upright in this chair was exhausting. And I fell asleep. I stirred enough to change the channel when the movie ended (It was "Office Space") and fell right back to sleep. The good news is that while I had a weird dream mixed with the dialogue from an Edward Norton movie (I had changed the channel to "Keeping the Faith"), I had a dream about my parents. They were in one of those HUGE RVs- they actually used to have one, bigger than most people's first apartments. And they had takeout food in this dream and it smelled like cinnamon. They told me everything was all right and they were doing good.

And then I woke up. And while I was basking in the warmth of that dream, reality ripped me back when I tried to sit up. That's when I flailed like a turtle on its back for a moment. Luckily, I was able to get upright, because the dogs had to go out.

And I felt awful for the whole day. Just worn out and everything I did hurt. My body was having that all-over burning pain and I wanted to collapse every time I had to do anything. And around 730 PM, I took my pants off. My yoga pants were in the dryer, so I just put on a big T-shirt and left my jeans off. And about thirty minutes later, I started to feel better. I stopped feeling like I was in screaming agony and am now at the low-grade aching. I'm not running any marathons like this, but at least I'm sitting upright and typing.

All because I took off my pants. My yoga pants are now dry, but I'm still not wearing any pants. Those dudes who wear kilts have got the right idea. Fuck pants, I say.

Monday, April 14, 2014

You all know me. You know that I attempt humor in an effort to make things not suck so much. We use gallows humor in this family and let me tell you- if I didn't have gallows humor, I would have been reduced to a quivering puddle of sadness a long time ago. Hell, my last blog post, I referred to the "Ghost of my dad" when my office chair broke.

Anyway, I follow a number of fibro support pages on Facebook. Sometimes the info is repetitive, but I don't mind so much. Those pages also post inspirational shit as well. Stuff about not giving up and sometimes inspirational humor stuff. And it is definitely the humor stuff I like best.

The other day, one of the pages posted one of those "some-ecards" greeting cards with a woman collapsed in a chair, crying (or sleeping) and the quote was: "That sad moment when you realize your trash goes out more than you do." Mildly amusing, because my trash does go out once a week and that's more than I do for ten months of my year. But, the caption one of the page admins put on the photo sort of upset me. Well, not "upset" because I'm not angry about it, I just found it depressing.

"...Other than an occasional lunch with a friend, I have no social life. How much of a hit has your life taken since fibromyalgia?"

That's sad, man. I mean, why would we want to dwell on all the negativity? I have flareups when the weather considers changing. And right now, in Wisconsin's "All Four Seasons in a Week" time of the year, I'm in flareup hell. Just skipping the pain- because you know how that is- I slept all night on Saturday night (I was awakened briefly at 230 AM by a thunderstorm), I took about an hour's nap early in the morning. And usually, I'm good to finish out the day. But Sunday, I sat down on the sofa to watch a movie and get covered in Chis and I proceeded to fall asleep sitting up. For an hour. Sitting upright.

So, why would I want to write a reply to that sad question? How shitty has my social life gotten since the fibro? Well, why don't I tell you what I've gained since the fibro diagnosis and subsequent treatment instead?

I was diagnosed a few days before the opening day of Bristol in 2010 after suffering for years. That day, I almost made it to closing (I wasn't on any medicine yet by that point. The VA hospital mails my medicines to me). That summer, I went to faire three more times and stayed to closing or almost closing each time. In 2011, I got a season pass and stayed till closing every single day. I haven't missed a day of faire since 2010. Because once I started getting treatment for fibro (which was mostly just muscle relaxers to help me sleep more) I started being able to do more.

I had already experienced the slow loss of everything I enjoyed doing. I went from walking four miles and doing 30 minutes of yoga every day to dropping the yoga. Then cutting back to three miles, then two, then one... and when I couldn't make it a half mile, I stopped walking altogether. I had to stop going on bike rides with my kids (we'd drive to a bike path in the next town and ride through the woods and parts of the city, it was nice). I stopped doing pretty much anything I didn't absolutely have to do. Everything I did became an algebra problem based on how many hours was I going to be out, how much walking/on my feet was involved, and how much pain meds I could safely take and still drive. Sometimes, I'd be lucky and the Disabled Guy would drive and I could take all the pain meds I needed.

When that doctor handed down that official "You have fibro" diagnosis, my life got better. Without the treatment, my flareups would be more intense. There'd be more pain, more exhaustion. There would be less fun, less photography, less renaissance faire time. Without the diagnosis, I wouldn't know the wonderful people I know. Sure, when it isn't faire season, most of my socialization is online, but that keeps us together till we can actually get together and wear silly clothes that defy the weather's logic. And you can't compare one person's thing with another person's thing. There's always that nugget of "there are other people who have it worse!"... well, there are other people who have it better. But I don't begrudge their good time because I can't have the same good time. And the other people who have it worse? I'm sorry it's worse for you, but I shouldn't cut down on my fun because you're not having any.

So... should I dwell on "all the things I can't do" or should I appreciate "all the things I am doing"?

I'm going with the doing instead of the not doing. Because the doing is more fun. And I will be doing stuff... soon.

Wednesday, April 9, 2014

I've been procrastinating. I've put off writing this blog for almost a whole week. Lack of motivation, exhaustion, pain, stress... take your pick. On Monday, I procrastinated writing this by going to the store. And we all know how I hate going to the store.

I am a goddess when it comes to procrastination. And the weird thing about that is that when I used to do it, I would suddenly become more creative or become inspired. I had a deadline for homework or something and if I waited to the day before it was due, it would end up being some of my best work. I was even late on a photography assignment. And the teacher had a policy- if you were late, she took points off per day that you were late. I handed in my assignment on panning two days late. I should have had an entire letter grade taken off for that. She gave me an A anyway, because "it was too good for me to give it a B..." her words to me.

My body has decided that since I won't write a blog post in the daytime, it would help me get it out in the nighttime.
Well played, Fibrofuckingmyalgia, well played...

So, one would think that procrastinating this blog post for a week would result in something fantastic. Nope. Not so much. What we are getting, though, is a blog post brought to us by Insomnia Lite. And did I even start this when I got out of my wide-awake bed? No. I went to Facebook where I replied to some posts and then bitched about the fake insomnia. And then I read a really cool Buzzfeed article about one of the jousters I know.AND THEN I WROTE MY BLOG POST Nope! Not even then! I opened Photoshop and dug out my backup hard drive to find some photos from last year's Janesville Ren Faire to add text saying: "Soon". But then I stopped myself, because c'mon, I needed to type this up, right?

Here I am, having the all-over-itchy-body thing. And don't get me started on the muscle thing. I'm having the pain, of course. But not just pain, I have an all-over tightness in my muscles too. I feel like I need a good stretch."Why don't you just take a moment and stretch things? You used to be athletic, right? You know how to stretch properly..."
YOU WOULD THINK SO, WOULDN'T YOU?!

As I lay in my bed (Laid? Lied? Lain? Slain?), itching and awake and achy, I decided to do some stretching to ease that muscle tightness. It didn't go exactly as planned... my quad- that's that big-ass muscle in the back of the thigh, right? You know, right under the ass? That big-ass muscle on the back of my thigh decided to remind me it existed by getting a cramp of Charlie Horse proportions. So... that. I started to stretch my arms and shoulders, but I felt that sharp tightening, so I stopped before it became a full-blown Armlie Horse.

To add to this general discomfort, my desk chair broke a few weeks ago (it had a good and busy life, supporting my ass- through the knee replacement and everything, so it was at least five years old). So I took my dad's. I mean, c'mon, he's not using it. Apparently, his ghost was, because it lasted a week in my house before it broke. (I have no idea how old his chair was). So, the Ghost of Dad decided that he didn't like me taking his chair and it broke... it literally broke beyond use the day I ordered a new office chair online (it should be here Friday!). I'm sitting on a hard metal folding chair with a sofa throw pillow on it. I would have thought with an ass as large as mine that I'd have a little built-in padding. Turns out, that's just for show. I'm sitting up so perfectly straight that my 8th grade typing teacher would be proud. (I'm also typing without looking at my hands, because that's how I was taught and my keyboard is on a little shelf under the top of my desk- good thing schools taught girls how to type in the early 80s, right?).

Oh, I do have one good thing to say... remember how excited I was about having that shot in my foot? Well, less than a week later, it was back to its usual level of Railroad Spike Hammering pain. I waited another few weeks, because I wasn't sure how long it should take to go into full effect. The last time I had it done was while I was under anesthesia for my total knee replacement and I was on the fabulous pain medication known as Oxycontin. I even had Morphine the day after the surgery. That was a fun drug. As the nurse put the needle into my IV tube, I was writhing in pain and as she pressed the syringe plunger (that's what that thing is called, right?), I asked: "How long will it be before this takes effect?" Except I said it more like this: "How long till ThIs TaKeSSssss uhhhhffff-ehhhcktuh?" And then I woke up four hours later.

So you can see that I wasn't sure how long that shot would take to work. I went back after four weeks and the doctor discussed my options with me. And so as not to bore you to bits again, I covered that in a blog post on Conversations with the Disabled Guy. To summarize- my choices were "another shot and hope for the best" or surgery. And the surgery needs 6 weeks to recover. And I won't have that kind of time till November. Just a reminder- my fibro made my knee replacement recovery last a year and a half instead of just a year. So quite obviously, I can't count on my body going along with that 6-week timeline.

We opted for the "another shot and hope for the best" option. And good news- it worked this time. Now the only pain I have to deal with is the fibro (and the tendinitis in my feet and shoulder, and the arthritis in my hands and wrist... but hey, that's okay!).

I'm sitting here, in the middle of the night, on a horrible metal folding chair and sofa pillow, listening to Flo Rida, and itching like I've got some kind of medieval disease.